Saturday, August 14, 2010

"Good" News

August 6, 2010

We were told that Leightyn's MRI could take up to three hours. That's a long time to wait when it concerns your five year old daughter. During this time, Landen and I went downstairs to get our parent badges. The badges were a reality check. We were no longer there just visiting a child, we were there praying for a miracle for our child. Also during this time, more family members and friends arrived. It was great to have a support group that filled the waiting room.

At one point, my dad went to the hospitality desk and asked for any news on Leightyn. My dad walked back in with a somewhat smile. The hospitality desk had told dad that the nurses had some good news to share. Landen and I went out and talked to the hospitality desk and we were told that maybe it wasn't as bad as they thought and that there was some good news. At that moment, I was able to breathe easier, had a skip in my step, and was on cloud nine.
When we were finally allowed to see Leightyn, I couldn't stop smiling. She was going to make it through and we were going to fight the mass in her head. As Landen and I entered the room, we talked to Leightyn, held her hands, and rubbing her legs. I remember saying "Leightyn, you are gonna make it. Just wake it! Come one Lei, wake up!". I remember the nurses looking at us like we were crazy. None of them had a smile on their faces.
The Dr came in and wanted to talk to Landen and I about the MRI. I just couldn't wait to hear the good news. I don't remember all he told us...just "no blood to the brain, significant brain damage, no hope, nothing could be done, the mass has taken over the brain and caused to much damage". As he talked, I lost it.

This was our conversation
Me: We were told there was good news.
Dr: Good news...I don't know where you heard that
Me: The desk man told us that things weren't as bad and that there was some good news.
Dr:I'm sorry, I have no good news. There is nothing we can do.

We then had the grandparents come in the room for the Dr to share the MRI results with them. Remember....they were all expecting good news also. We had chairs brought in so every one could have a seat. As the Dr talked, the tears flowed and facial expressions quickly changed.
Another PICU Dr came in. He told us that there was a rapid growing aggressive tumor in Leightyn's brain that grew so quick that there was nothing that could be done. If we would have gotten a MRI a month ago, nothing still could have been done. There was no treatment and there was no hope in medicine. Our only hope was a miracle from God. If they were to attempt surgery, the brain had so much damage that if Leightyn was to make it through surgery, she would live in a facility the rest of her life.
The drain tube in her brain was no longer draining. The tumor had pushed the brain against the tube causing the tube to collapse.
The Dr told us that they would be moving Leightyn to another room that would be connected to the conference room. Our family and friends would now be able to visit Leightyn 24 hours a day. The normal policy is parents only.
The next morning the Drs would being a 12 step test to determine if Leightyn had any brain activity. The same test would also be completed 12 hours later to determine brain activity. If she passed the test, the Dr would send her straight to surgery to attempt to remove the mass. If she didn't pass the test, she would officially be pronounced brain dead.


  1. I am so sorry. I am at a loss for words but thank you for having the courage to share your daughters story

  2. Missy, I am praying praying praying for you and your sweet family.

    Love you!

  3. Found you from Kelly's Korner. Your initial post reminded me a lot of what life was like for us when my son began having status seizures as a neonate and again at 4 years old. I feel guilty that we were granted "only" a seizure disorder. As I read this post, and read about the man at the desk telling you someone had "good news" for you -I was pissed for you. Words could never express my sympathies regarding the wrong information given to you in that moment -I literally have to catch my breath just reading it.

    I will pray for you and your family. I am very sorry for your loss.

    Julie B.